Although nobody would deny the right of those with mental health problems (or indeed, anyone) - to have their voice heard, Richard Bentall's comment hints at a dilemma for some clinical psychologists.How could - or should - the user-voice (or 'lived experience') inform the science of clinical research and clinical interventions... or are those voices and experiences in but not of science ?

My mind...It ain't so openThat anything...Could crawl right in

An over-riding faith in and prioritising of patient experience is a laudable ambition, but one that creates significant problems for clinical psychology. Would Professor Bentall be consistent and retain the same enthusiasm for his criterion to assess the efficacy of pharmacological interventions (or even self-medication)? When we enter the realm of lived-experience, all experiences must be equally entertained - it is not a world of science, priority is not determined by evidence - there is no priority beyond those advocated by the loudest and most polemic voices. Professor Bentall clearly does prefer the opinions of some patients - those who espouse preferences that accord with his own - CBT for psychosis - whatever the evidence states

Parade by Magazine

They will show me what I want to seeWe will watch without griefWe stay one step ahead of relief....What on Earth... is the size of my life ?

Secondhand Daylight

I've got this bird's eye view and it's in my brainClarity has reared its ugly head again...so this is Real LifeThe prioritising of service users also appears in the recent soi-disant paradigm shift document from the British Psychological Society Division of Clinical Psychology:

"The needs of services users should be central to any system of classification. Service users express a wide range of views on psychiatric diagnosis, and the DCP recognises the importance of being respectful of their perspectives. Some service users report that diagnosis is useful in putting a name to their distress and assisting them in the understanding and management of their difficulties, whereas for others the experience is of negativity and harm"

Again, of course, we are not told how any system of classification could be based on the diverse views of service-users. This is a should-based position statement rather than an evidence-based science statement - in which service-users seemingly view descriptors of their problems as part of the 'cure' or as the problem. Or more correctly, how some influential clinical psychologists view such labels as being part of the problem for service-users....everyone's view is 'entertained', but some are preferred.

The Correct Use of Soap

A related and interesting trend in some areas of clinical psychology is the increasing reliance on patient self-report as a complementary or even only source of data. Introspection as a primary source of data has its place in psychology ...although some might argue that place resides not in the last century, but the one before that - in the 50,000+ pages written by Wilhelm Wundt

When investigating clinical interventions, some researchers depend heavily on patient self-rating scales. It wouldn't be overly surprising if self and clinician measures were discrepant or for researchers to (de)emphasise either measure according to their hypothesis. Indeed, I have previously alluded to the clinician-self discrepancy. For example, in my post (CBT: Shes Lost Controls Again) on Morrison et als recent study claiming that CBT reduced symptomatology in unmedicated individuals with schizophrenia. One feature of this methodologically poor study is that the patients rated themselves as... experiencing no recovery following CBT. If we are to prefer to believe patients, then we must conclude that CBT is ineffective in cases of unmedicated psychosis - not, of course the conclusion that Morrison et al promoted in the media - based on their own nonblind assessment of their patients.

Magic, Murder & the Weather

"Who are these madmen! what do they want from me!with all of their straight-talk from their misery"

Largely unexamined, we studiously avoid asking questions like...who or what best captures 'depression'? The person rating their own experiences (on something like the Beck Depression Inventory: BDI) or a clinician assessing them from the outside with other scales?

Definitive Gaze (by Magazine)

I like watching youbut I don't watch what I'm doinggot better things to doso this is Real Life....you're telling me

It's tempting, of course, to assume perhaps that some combination of both (self and clinician) is required. But as we saw above, does a combination help or create confusion and importantly, does it offer greater opportunities for researchers to cherry-pick or fudge results? Cuijpers et al 2010 conducted a meta-analysis of 48 psychotherapy (largely CBT) intervention RCTs comparing outcomes on self vs clinician ratings for the same patients and found that "clinician-rated instruments resulted in a significantly higher effect size than self-report instruments from the same studies"

Like the Morrison et al study of psychosis outlined above, such findings could impact outcomes for some patients - its easy to imagine a clinician declaring (contrary to the beliefs of the patient): "I know what you are saying, but believe me...as far as I am concerned you are well!".

Feed the Enemy by Magazine

But they always seem to knowexactly what they're talking aboutnow they've got you in a corneryou've got no room to moveyou've got no room for doubtthat's exactly what they're talking about

Turning this around, what is the evidence that people with severe psychiatric problems can reliably assess their own experience?What happens if a core component of severe psychiatric disorders is that insight is compromised? I am not denying insight to those with severe psychiatric disorders ...rather, this is a question for all of us - who amongst us can accurately assess their mental states -nevermind a troubled mind? Studies indicate that between 50 & 80% of those diagnosed with schizophrenia show partialor even totallack of insight into the presence of their mental disorder per se (Insight being defined here as the awareness of having a mental disorder and its symptoms).

It is notable that the culture of self-assessment is more prevalent for some disorders than others. Why do we liberally use self-rating scales (BDI) to assess depression and its interventions, but very rarely use self-ratings to assess schizophrenia and its interventions? Is it really to do with the fabled lack of insight in schizophrenia? What is the evidence that they are any less accurate than those with severe depression? What about people with bipolar disorder....would it be OK to have self-assessment for their depression, but rely on clinicians to assess their mania?

No thyself

"Your furniture is made to injure me"Finally we arrive at the more pervasive and crucial question - what is the purpose of psychological intervention? One obvious aim might be to enable the patient to eventually say 'I feel better/cured/recovered' ... whatever these mean to the sufferer. This could be independent of ascertaining the veracity of this claim

But should we refer to this as science or evidence-based? Perhaps this is where some clinical psychologists are destined - outside, beyond normal science - maybe we should call it outre scienceDo you no thyself?

Postscript: Stanley Green was a wonderfully eccentric character (the Protein man) from my early teenage working life around Soho in the late 70s. In my book, anyone with such dedication deserves to be remembered...I have of course stuck to his dietry advice ever since!

5 comments:

@melaniemcbrideThis is exactly the same issue with education. Namely, that teachers, whose professional interests are at stake, give the lie to the same argument about 'students want it' or 'students are learning - look at their engagement!' Students, like patients, are a vulnerable sector. They are literally 'at risk' in any context where their agency is compromised and power relations are unequal. Furthermore, there is what Wood and Kroger (2000) refer to as the problems of the 'agent/patient' relationship. In discourse, this describes the unequal power relations that exist between psychs and their patiences and how we account for these discursively (I quite like their book on discourse analysis btw - an interesting take on CDA from socio-pscyh model). The problem here is one of ventriloquism - same one that impacts any group who are more spoken for than speaking. And whose agency to speak is not only compromised by those external power relations but also their own internal subject positioning as subjects whose identity is already questioned or scrutinized (I myself, as a woman with Asperger's, am such a subject). This isn't so much a problem of empirical evidence as it is with a flawed conceptual foundation for arguments that derive from faulty and problematic subject positionings and an absence of nuance about power and a variety of other variables that mediate how, when and why a subject can or will speak for themselves - under what conditions and etc. I realize I've gone off on a tangent but ... as always, there are parallels. And the one that comes to mind immediately here is that of the student/teacher, adult/child and every other relationship where the first variable is an unequal power relationship.

This is a great post and will hopefully stimulate some soul searching. The questions you raise need to be consistently re-considered.

I seem to remember a fantastic satirical clinical psychologist in Will Self's "How The Dead Live" who administers "quality of dying" forms for his research on a cancer ward. The satire is in this individual's inability to engage with the depth of the grief he is surrounded by. Perhaps this is the sort of caricature many clinical psychologists are worried about becoming. Happily there is no conflict whatsoever between being scientifically minded & highly data literate and being kind and thoughtful about other people's emotions and experience. Anyone who says otherwise is probably selling snake oil. The really interesting question is not "should we be interested in personal experience?" but "what experiences; what ways of hearing those experiences are the most informative?". Psychologists know relatively little about other people's minds, but we have at least the wisdom that we are inconsistent and opaque to ourselves and can benefit from the input of a third party. Clinicians need to accord experience the importance it deserves while also communicating something of its transience; the ways in which it changes and misleads. Quite a lot of mental health problems, after all, are about being misled by our experience in particular ways.

"Data" is a name we give to a way of organising and compiling information about our experiences. It puts us in touch with facts about ourselves that are not in our immediate awareness. It ought to be empowering to have numbers on things because (manipulations notwithstanding) they cannot be argued away. No amount of window dressing can completely conceal the things revealed by good statistics. They can't do justice to our experience in full, but then that's not what they are for.

Not the most optimistic blog! But a handy reminder of the human bias to see-what-we-want-to-see and the limits of our capacity for self-knowledge (however certain of ourselves we are). Psychologist Daniel Kahneman’s “Thinking, Fast & Slow” has a lot of relevant stuff about the unreliability of our insight, in particular the discrepancy between our “experiencing selves” and our “remembering selves”. As someone with a diagnosis, a few thoughts occurred to me:

Lived Experience - In, Not of Science?: Occasionally, both. People like Kay Redfield Jamison and Lewis Wolpert (“Malignant Sadness), who combine the personal and the academic/scientific, add a valuable dual perspective.

Prioritising Patient Experience: There's no getting away from the centrality of the patient perspective in this field! But it would be patronising not to hear these accounts with the same careful consideration we apply to everyone. Experience should command a respectful hearing - but not a free pass. I was surprised when a leading clinical psychologist posted a link to Eleanor Longden's Guardian interview (http://www.theguardian.com/technology/2013/aug/08/ted-talk-eleanor-longden-schizophrenia) commenting, "This interview says everything you need to know about psychiatry. Haven't seen anyone dare criticise it yet." Eleanor Longden's achievements in recovering, and speaking publicly, are fantastic - but no one’s views should be beyond criticism. No space to critique, but it’s ironic that her interviewer (who put her forward for the TED talks) is Jon Ronson - the man who got everyone diagnosing (yes, diagnosing ...) everyone a psychopath through his book "The Psychopath Test"!

"Expert by Experience": This phrase, part of a really good initiative by Mind, could usefully be amended to "Expert by Experience +" that's to say, plus study, training, work/volunteering, being a carer etc ie something that takes survivors/patients beyond their own experience. We've all been to school, but that alone does not make any of us an expert in education; ditto being a patient.

Hearing-who-and-what-we-want-to-hear: I can’t help thinking that the overstatements about the efficacy of CBT (as well as the DCP’s calls for an end to diagnosis) are the product of too much of a good thing: the desire to find non-drug treatments and the desire to validate the individual experience. But their inconsistency and selectivity, highlighted by this blog, are an almost inevitable outcome of undervaluing methodology and an evidence-based approach. The impulse it seems is to humanize mental health care: but the unintended result is a disservice to patients. As patients and carers, you want and need reliable information about what is most likely to work. Raising expectations about CBT sets people up for failure and disenchantment. Talking about evidence-based approaches can seem somehow clinical and indifferent in the face of people’s highly emotive lived experiences, but the most humane for patients and their friends and families is reliable information and knowledge.

Beyond self-report - Aids to Insight: given the limits of human self-awareness, and how hard it is for doctors to evaluate patients in a few minutes in the artificial environment of a clinic, it’s promising that new tools are being developed to help patients to self-monitor, providing factual data to cross-reference with self-reports. Ideally, these can help patients develop insight themselves so relapses are caught early; but they can also help one retrospectively understand events – insight in hindsight has its value too. An example is Oxford University text messaging service, Oxtext (http://oxtext.psych.ox.ac.uk/true-colours) - an earlier paper version for charting moods was also useful. Generic smartphone apps focusing on indices of health like sleep could also provide useful, objective and timely data. The recent Horizon episode “Monitor Me” (http://www.bbc.co.uk/programmes/b038p1pm), showed a specific app for PTSD. More old-school, and requiring due care, family/close ones shouldn’t be overlooked as a useful cross-reference, providing another perspective on how things are going in everyday life, beyond the appointment room. Self-reports alone are not ideal, especially given the fluctuating nature of some illnesses.

“What is the Purpose of Psychological Intervention”? The blog ends with this question and suggests one potential answer as being that patients be able to say, "I'm feeling better .." This can only be a partial answer: in psychiatric disorders, we're not just talking about feelings, we're talking about function - and, fortunately, that is easier to evaluate and less subject to fluctuation. Successful psychological interventions enable one to function sustainably in the world - and hopefully feel better too.